Tec anniversary appointment cancelled with Neuro!

I’v been taking Tecdifera for a year now and things are good. Ive had a few issues during my first year including server gastric

problems requiring emergency treatment and morphine to help with the pain but that has now settled & also some issues with low

lymphocyte levels.

Anyway, my letter arrived changing my appointment from end of October to Monday 13th December. I thought OK and went to

change it on the calendar. But Monday 13th doesn’t exist - its actually a Tuesday. So, thinking someone had made a tpyo I called the

hospital yesterday to sort it out only to be told my appointment was for 13th December 2017. I told the booking clerk of my issues

and that I needed to discuss the blood test I am about to have prior to my appointment with my gp to be told, after she had spoken to

his secretary that the earliest appointment is May!!!

So I have decided to organise a follow up appointment with my gp to discuss my blood results and will call the MS nurse if I need


Has anybody else had any issues with Coventry University Hospital and Mr Shehu?

Hi Sallum

That seems scandalous to me. Surely you should get a review appointment with your neurologist at least once per year. And if you’ve experienced some problems with the Tecfidera during your first year, it seems even more important to see the neuro.

Have you tried speaking to the neurologists secretary?

If you can’t get an appointment sooner than next May, I’d be tempted to get on to your hospitals PALS (Patient Advice & Liaison Service).


Thanks Sue, that’s a great idea about contacting PALS. I’ll see what happens after my blood test. You’d think they’d get cover for his patients rather than just leave us waiting…

i have nothing to add except for sympathy.

you sound like you are having to contend with a pratfall of clowns.

as if life weren’t already challenging enough?

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I had something similar with my hospital. I’ve now managed to get the neuro’s secretary’s email and phone number and it seems to work better if I can go through her when there’s a problem


I have her direct number too but the earlist shw came up with is May. I’ve told her what my plans are re my bloods and will be in touch once they’re back. To be honest i travel a fair distance to cov hospital & Bham QE is much cliser - i was diagnosed there but due to postcode lottery was moved to a hospital further away! I’ll wait to speak to my gp & then decide. Thanks x

I know! I just worry for others who dont have the umph to take matters into their own hands! I’ve also advised a friend who is waiting to see Mr Shehu who’s waiting for results of an mri who has a probable diagnosis of PPMS!

Well, this is slightly annoying… Yesterday I received a message from a friend whose husband has ms and also her daughter is awaiting results after a mri who share my neuro. She contacted the hospital to see what was happening and was told that our neuro was not on sick leave at all! I’m completely at a loss as to why they would lie so blatantly. I have my appointment with my GP on Monday and will raise my concerns, but to be told he was on long term sick leave and the earliest appointment is May when I am due my 1st annual appointment since starting tec is appauling especially as I’ve had issues with low lymphocyte levels which recently which last test were at 0.62. I will be putting this in writing to the hospital after my gp appointment. Feeling really annoyed now. Grrrrr

Once again, it seems you are being treated scandalously Sallum.

If your lymphocytes are down to 0.6 and stay that low over a few months, then you need advice on whether to stop Tecfidera. Are you getting your GP to test monthly in the absence of neurologist appointments? Perhaps you should.

And definitely complain to your hospital.

It’s dreadful treatment.


Are you able to request a cancellation appointment with the neurologist? By asking the bookings team or neuro’s secretary. I have requested this before and have given one or two days notice of my appointment. I explained to them I am happy to do this.

Hi Sue, I was on monthly blood tests while my levels were at 0.52. Then, once it improved (albeit slightly) to 0.62 was changed back to 3 monthly tests again. My gp surgery are checking my bloods and sending them to my neuro as i have to travel a fair distance to Coventry Uni Hospital. I had my bloods taken last week and due to circumstances arranged to discuss them with my gp as i can’t see my neuro. Rest assured I will be writing a complaint letter to the trust regarding this situation. fingers crossed things have improved for me since August. Thanks Sharon x

Thanka Lenny, but when I called originally about the mix up of dates and was told earliest was May. I will call the Hospital once I’ve got my results. so I could ask then. Cheers Sharon x